Ailing teen dreams of meeting Bruce Springsteen

Jul. 30, 2013
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Christopher McCann, 19, of Holmdel, N.J.,center seated, has Septo Optic Dysplasia/DeMorsiers Syndrome, which has left him blind and with several hormone deficiencies. He has overcome doctors predictions that he would likely never walk and talk and now he can. His family from left are father, Chris; brothers Liam, 11, and Sean, 12, and mother Tracy. / Gannett/Mary Frank, Asbury Park (N.J.) Press

by Dustin Racioppi, Asbury Park (N.J.) Press

by Dustin Racioppi, Asbury Park (N.J.) Press

HOLMDEL, N.J. -- Christopher McCann presides from a sofa that gives his bulky frame a little elbow room, and extends his left arm to anyone who passes by to offer a handshake.

He scans the area in front of him and finds the collar of his yellow lab, Gunner, and sweeps his hand across the dog's ivory coat.

Usually his first question to strangers is, "Do you have a dog? What's the name of your dog?" Now, with a handful of new people in the room, he is overwhelmed with curiosity about their household pets.

Christopher is in an exceptional mood today, say his parents, who have been recalling the litany of health ailments their first child has had since he was born 19 years ago.

The list is hard to imagine and to pronounce. But Christopher - homebound, mostly blind, unable to shave himself, susceptible to outbursts - is not one for sob stories or feeling sorry for himself. He won't even let a negative word float in his ear.

For the last year his optimism has been placed in the hands of the Jersey Shore chapter of the Dream Factory of New Jersey, a nonprofit that fulfills the wishes terminally and seriously ill children.

Christopher's dream, he told the organization, is to hold the hand of Bruce Springsteen.

Springsteen is a man Christopher deeply admires and whose version of Merry Christmas, Baby is one of the songs that helps him fall asleep from October through February, said his father, Chris.

It is a simple but lofty aspiration, but then again Springsteen, who has been touring overseas, has a habit of just showing up on people.

Since Christopher was a young boy, his goals have been high and he has reached all of them, even when the odds were against him.

Problems early on

McCann was born in his mother's hometown of Derry, Ireland, in June 1984 and almost immediately his parents sensed something was off.

His hemoglobin levels were low, he was jaundiced and "his eyes were jumping," said his mother, Tracy McCann, 41.

The doctors concluded that Christopher had hypothyroidism. That August the family returned to the United States, where the news got worse.

An endocrinologist "took one look at him and knew there was something wrong," Tracy McCann said. A couple of days later, another doctor diagnosed Christopher with septo-optic dysplasia, or de Morsier syndrome, a rare congenital disorder. Christopher's physician, Dr. Kirk Kerensky, said the condition means that the portion of the brain that controls vision does not develop normally.

The prognosis is grim: blindness is common, as is low muscle tone, seizures and hormonal problems. Doctors told the McCanns that, in addition, Christopher might never walk or talk.

"It was like a meteorite coming out of the sky, hitting (Chris) and me," Tracy McCann said.

Christopher was a persistent child, though, and his relentless optimism is a trademark.

He interrupts - every time - when someone says "maybe" or "hopefully" or "horrible" in his presence, and when they do, he demands they correct it.

"No maybes or what-ifs in this house," Sean McCann, 12, one of Christopher's two younger brothers, said with a mix of exasperation and admiration.

"Only determination," said the boys' father, Chris, 42.

Christopher was also diagnosed with autism and cerebral palsy on his right side, which has required several surgeries as he has grown from a fragile little boy to a hulking young man. For years doctors tinkered with the ingredients and dosages of his medication cocktail to minimize his seizures.

He also has diabetes insipidus, a rare form of the disease marked by excessive thirst, and multiple endocrine hormone problems, Kerensky said.

"But a lovely kid, lovely family," he said.

Looking for the Boss

Last year the McCanns got involved with the Dream Factory, based in Kentucky. The organization has sent children to Walt Disney World and united one child with the Jonas Brothers for a day. Another child wanted to meet a zookeeper, and it was so, said Luanne Wood, screening coordinator at the Jersey Shore chapter. The goal is to provide a distraction and create a memory.

Wood said that for the last year the Dream Factory has been unable to reach Springsteen, who owns a home in Colts Neck, N.J. Arrangements by the Press this week were made to ensure that the Dream Factory's request for McCann went to the proper representatives for Springsteen.

Springsteen has been touring in support of his latest record, Wrecking Ball, since last March. The most recent leg ended in Ireland on Sunday, and the tour resumes in Brazil in September, according to his website.

Christopher did not go into detail about his choice. Chris McCann said it is because Christopher "loves Christmastime," loves playing Merry Christmas, Baby, and would like to ask Springsteen a question.